Hi, my husband has a hemangiopericytoma, he had surgery in 2003. The tumor came back 10 years later and spread and then he had 6 tumors in his brain. He went to MD Anderson in 2013 and had surgery AGAIN and then radiation. 2 tumors they could not take out because close to brain stem. 1 Year after radiation one of the tumors started to grow in 2014 and he had SRS in 2014. He had been cancer free and had serial MRI's to date. The reason I am responding to you is in December 2022 he had shortness of breath. I took him to the ER and they did a CT and other work ups and it came back with tumors in his lungs and Plueral. His radiation oncologist told him it could not be the same thing that was in his brain. Well he had a biopsy and guess what it hemangiopericytomas. We have been through so much the last 6 months. Also he just had an mri in May 2023 and still NO reoccurrence in the brain. I do have some good news though he went to NIH/NCI and Duke University and all said he should be on Sunitinib its oral medicine. He started the Sunitinib in March 2023 and he is still on it. He had a scan in May 2023 and the tumors are shrinking. I highly recommend you get a PET scan and get checked all over, this cancer like to travel and likes to do it years later, in his case 10 years later. He is now diagnosed with Metastatic Hemangiopericytoma of the Meninges. I agree this is rare and we can't find anyone with this as well. You should call NCI/NIH they were the most helpful for us.